After suffering an allergic reaction to antipsychotic medication, eighteen-year-old Oliver McGowan’s brain was so swollen that it began to bulge out of the base of his skull.

Admitted to hospital because of an epileptic seizure, Oliver was given olanzapine: an antipsychotic medication that he was allergic to. Oliver and his parents pleaded with medical professionals not to administer the drug, and his hospital passport even noted the allergy. 

Yet, the medicine was given to Oliver without his parent's knowledge, and he developed neuroleptic malignant syndrome (NMS). He died on the 11th November 2016.

"The medics were absolutely misinterpreting Oliver’s autistic behaviours to be delusional".

His parents were forced to make the agonising decision to turn off his life support when it became clear he would be left with catastrophic brain injuries. The autistic teen - who had a mild learning disability - would never walk again, be blind, and have no memories or language, his family were told.  

A call for appropriate training for NHS staff

Paula, 53, is determined to ensure that Oliver’s death leaves a lasting legacy of meaningful change in the NHS.

Last month, the government committed to work on plans to make learning disability training mandatory, and earlier this year NHS England said autism and learning disability would be a clinical priority in their upcoming ten-year plan.

Paula thinks that implementing reasonable adjustments at Bristol’s Southmead Hospital where Oliver was treated would have saved his life. Oliver went from being a Paralympic hopeful to lying in bed intubated and clinging to life.

A key facet of any training must be to ensure that those with learning disabilities and autism who have the capacity are listened to, argues Paula, saying: “to me that’s the crucial bit — it’s reasonable adjustments and it’s effectively listening to what that person is saying, giving them the tools they require to be able to say what they really want.”

Primary school teacher Paula believes medics’ lack of understanding about autism’s core symptoms can make a stay in hospital more traumatic for those with the condition. “I found in Oliver’s situation that the medics were absolutely misinterpreting Oliver’s autistic behaviours to be delusional", she says. "It’s a known fact that people with autism have repetitive behaviours and that, crucially, is where medics are getting things wrong — they don’t understand learning disabilities and autism and these people are detained under the Mental Capacity Act.”

Paula says this lack of understanding makes a reliance on psychotropic drugs and restraint more likely.

Consent and best interests decision-making

In the wake of her son’s death, Paula started a petition to make learning disability and autism training mandatory for all NHS staff. It now has over 50,000 supporters and was recently debated in the House of Commons.

As well as Oliver, Josanne Wadsworth, 31, Richard Handley, 33, Connor Sparrowhawk, 18, and Judith Benn, 54, all had learning disabilities and died in NHS care. The deaths all left serious question marks over the quality of care.

Earlier this year, the Learning Disability Mortality Review (LeDeR) highlighted how those with learning disabilities die 15-20 years earlier than the general population. 

Mencap research has shown that 1,238 children and adults with learning disabilities die across England every year because they are not getting the right health care.

One of the problems that Oliver encountered during his hospital stay was having several doctors speaking to him at once using using complex language. Paula believes it’s crucial that the training for NHS staff emphasises the need to adapt their language for people with learning disabilities and autism. She also wants the training named after her son, believing the power of his story would personalise training sessions. Though the training must be provided for all NHS staff, Paula wants it delivered to doctors and nurses first: “to me, that’s essential. They’re the ones that save the lives.”

Key pieces of legislation like the Equality Act, the Mental Capacity Act, and the Mental Health Act should all be covered in the training with a focus on consent and best interests decision-making.

Paula wants a standardised model of training rolled out across the country and to avoid “tick-box exercises” or a dependence on e-learning. She believes high quality training is the only way to cut the unnecessary deaths of those with autism and learning disabilities.

Response to Paula's campaign

Health secretary Matt Hancock has ordered the Care Quality Commission to open an urgent investigation looking at the use of seclusion and segregation within the secure hospitals. This follows the recent discovery that over 40 people have died while admitted to an assessment and treatment unit (ATU) in the last three-and-a-half years.

Horrified by this, Paula says: “why are people with autism and learning disabilities locked up like this? Purely because they have got those labels and their behaviours are not understood and not managed. Again, it comes down to training, education, reasonable adjustments, understanding equality. These people are treated worse than animals. The training needs to be effective because at the moment we’ve got 1,200 deaths a year every year for no other reason than those people having a label attached to them called ‘learning disability and or autism’". 

A Department of Health and Social Care (DHSC) spokesperson said improving the lives of people with learning disabilities was a priority for the government and a “key part” of the long-term plan for the NHS. The DHSC plans to “consult on mandatory awareness training for health and care staff so they are better equipped to provide compassionate and informed care and help end unacceptable differences in life expectancy”, added the spokesperson.

Sign Paula's petition here: "Prevent avoidable deaths by making autism/learning disability training mandatory"